A blog supporting those dealing directly and indirectly with epilepsy in their bid to find freedom with the condition.

The Brightest Star

This week, slightly aside from the norm, I had the privilege of interviewing a very special young man, Takong Del Mezzo from Cameroon. As you may remember, last week I posted a video which offers a glimpse into the reality which thousands of people face who suffer with epilepsy.

Though not epileptic himself he has seen the tragic effect it has had on his sister’s life who does live with epilepsy. The opportunity for school in Cameroon was available to her; however, she states, “Each time I had an attack everybody would run away from me. I used to sit alone at my desk.” Now this didn’t just apply to fellow peers it extended to some teachers as well. This led her to leave school and find work, but when having seizures at various workplaces her employers would dismiss her leaving her unemployed once again. The outcome from these circumstances is that she now works from home, alone, and without friends.

An estimated 35,000+ live with epilepsy in the Northwest region of Cameroon. The attitude is a belief that it is caused by witches and wizards or the curse of evil spirits. Alienation occurrs by friends, family and even the church. The public are not aware of how to deal with seizures and are fearful as it is something unknown. In some situations, those experiencing a seizure will not have anyone to assist them to get to a place of safety and the outcome is that many have horrendous injuries including: falling into burning fires or hot pots of oil, falling out of moving vehicles and into water.

Many of the people have never seen a doctor let alone received a correct diagnosis. They have not the financial means to pay for this or medication. The cost of successfully treating epilepsy for the AED’s accessible is from 1350 CFA ($2.80) to 36,000 CFA ($75) per year, here in the West this is a pittance. In Cameroon, many are desperate and are unable to obtain this money which subsequently becomes a matter of life or death. There are approximately three AED’s available in the country. For some, with the money they do have they’ll buy one type of medication. It is often taken in the knowledge that they have no idea if the medication is the right one to take. This of course can make seizures worse; however, they are simply grabbing any opportunity which could potentially lead to a better quality of life.

The Cameroon Epilepsy Foundation was born three years ago after Takong realized that a significant change needed to be made. The Foundation consists of thirteen members, some of whom are family and others young medical volunteers. The government offers no financial aid which would make all the difference. Takong tells me if the money was to come through foreign aid it would probably end up in the private pockets of the government. Additionally, raising awareness for this cause brings challenges due to the money required to advertise in the papers.

Takong originally studied film making at Sydney University in Australia. After hearing the myths, stories, stigmas and living conditions which many experience, he started out with a group of friends visiting the communities. Here he acquired footage and interviewed the locals in order to capture the reality of the situation and began his journey of advocacy. He has completed one short documentary which I posted previously and is working on the extended version. Unfortunately, with circumstances as they are it is extremely expensive to move forward and finish this project. He continues to work to earn money which goes straight into funding his visits to the various communities offering a source of comfort and hope to all he meets. He offers counseling to families and those that he is able to provide medication for is money derived from his own pocket. He tells me, “We are at the stage now where we are unable to tell the villages that we are coming. We offer hope and on arrival we become inundated with people that we are unable to get to talk to, let alone help.” Despite this he is determined, positive, enthusiastic and refuses to give up on the challenge ahead.

When I asked him what his future aspirations were for the Foundation, he said, “I want to improve how people with epilepsy are perceived, accepted and valued in our society. I want to close the treatment gap between what is being done and what needs to be done. I want to help ensure epileptics and their families have access to a quality of life and to continue conducting educational workshops in schools, churches and at public events through the use of multimedia in a bid to alleviate the stigma.”

He is a true inspiration to all. He’s spread hope and joy to many who have resigned themselves to what may only seem like a bleak future, with his progress and hard work life is looking up.

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15 thoughts on “The Brightest Star”

Takong really is an inspiration. Has he considered crowdfunding to help raise money to complete his film? Two Organizations that I’m familiar with are the National Crowdfunding Association of Canada (ncfacanada.org) and Indiegogo (indiegogo.com). This sort of fundraising is used for all sorts of projects, but is especially common in filmmaking.

Thanks so much Freya Symes for this great article and for making it possible on your blog. Thanks to everyone for taking your precious time to go through the article. Thanks for your suggestions and support. God bless you all. I’m truly open to everything.

You create, you inspire and you connect with people of all lives…You are indeed a humanniterrian Delvis.

Reading this brings tears to my eyes.The mare imagination of another human being isolated is heartbreaking.Delvisyou have not only created an opportunity, inspired and given hope to these people, you have inspired me.To join you in the fight for Epilepsy.However this can be, whatever it takes, we have to make these people feel welcome and have dreams just like we all do.Because not even a disease is supposed to keep anyone…someone down.It starts by giving hope.Please let me know how to be part of this organisation and how best i can help as a film maker

You recognize and you Encourage me a lot Delits. Thanks so much for your great words of encouragement that left me with tears in my eyes after reading. Now I feel like a voice is being heard somewhere and I begin to see this dream come true. Like you said, everybody has dreams, these people do. But It’s heart-pounding to listen to their stories where you get to discover how shattered their own dreams have become. We have to make these dreams come true, we have to put back smiles on their face that have been void of it. You are a great person, only a few people would want to assist the underprivileged in this our generation. We’ll communicate more so i brief you on how to go about it. Thanks so much for wanting to be a part of this course. God bless you.

delvis you are something,after reading this article i am short of words.To take this bold step to standup for these innocent people who have been stigmatized and given no value and limited positions in the society because of their health condition is such a powerful inspiration to all those who had given up in life.You didn’t take your sister’s situation lying down but you took it as an inspiration to fight for all those who are in the same situation.I am so thrilled with this BOLD STEP you have taken,there are only few of you left in this world to
take this great step ahead and with this great spirit to fight for a better treatment for our fellow brothers and sisters who faced with this problem.Keep up!You can count on me for any support,i will not relent my effort to offer any help that is within my reach.

Thanks so much Anne Marie. God is in control of what I do and again, he keeps bringing loving and committed people to me to help in this fight. We should join and see what we can do to help these people. If you’d been to these communities you would understand what we go through when we hear them talk. They need us. I’ll get to you for your words, they help a lot.

I met Takong on Twitter and have read his website and connected on the Foundation facebook page also. What an amazing person, I am completed in awe and inspired. Yes, on person can make a difference, here we have some proof! Sending thoughts and prayers to all those dealing with epilepsy around the world.

Thanks all for your positive messages and support to aid the Cameroon Epilepsy Foundation. This gives us hope and helps us move forward in a bid to help the foundation grow and slowly begin to eliminate the stigma and fear attached to the condition.

We launched an online funding campaign on indiegogo to raise funds for our epilepsy sensitization campaign. Please visit and help us help these people. Please also share to your friends. Thanks for being part of this change. here is the link, http://t.co/w3t7bDPhbp God bless you

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Disclaimer

Please note this is not a medical website. The information provided is from Freya's own research and experiences. Whilst she has strived to make sure the information on this website is as timely and accurate as possible, she makes no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site, and expressly disclaims liability for errors and omissions in the contents of this site.